August 6, 2016
The home health care guy helps me get Bill into my vehicle, which takes us a good 45 minutes in the blazing heat of the summer. We finally get him strapped in, I’ve packed a quick bag for both of us and I head down to San Diego.
I get him to the ER that is one of the University of San Diego hospitals around 1PM. They come out, get him out of the vehicle, into a wheelchair and checked into the ER. That part actually went fast as the surgeon’s office had arranged for it. And then we wait while they hydrate him, etc...I will never forget as he was lying there he had a moment where he could whisper and he said “I’m sorry cakes”. He couldn’t walk, talk, eat, barely function, but at that moment he was able to say that. It about killed me right then and there.
We continued to wait for a room, however the hospital was full, so at 1AM, we left to go to another hospital about 20 minutes away that was actually the one where Bill had had his surgery.
I followed the ambulance and was told by the security guard at the front of the hospital to park in the ER parking. So I did because I didn’t really want to be walking from the parking garage. Of course, the next morning I had a ticket for parking overnight there. Tried to fight it, but gave up after jumping through a lot of hoops. Just didn’t have the energy.
So Bill got checked into a room and I stayed with him since it was now 2 AM. Unfortunately it was a shared room and the other occupant was screaming, getting up every 5-10 minutes, yelling for the nurses, etc…I thought I was going to lose my mind.
At about 4 AM a staff member comes in, a young girl, and I hear her say to Bill, “Mr. So and So (not Bill’s name), “I have your medication”. Luckily I was there and told her that she had the wrong person, she was looking for the crazy guy on the other side of the room.
I about lost it. First of all she’s talking to Bill like he knows what she’s saying or even if he does, like he can respond. Which was idiotic. Secondly, what if I hadn’t been there? She would have given a brain cancer patient whatever drugs the guy across the room needed!
Finally a day or two later they moved that guy to a different room and another guy became Bill’s roommate. I was trying to be empathetic to his situation, but honestly I was about to let him have it if they hadn’t taken him somewhere else.
On Monday, they put Bill into the ambulance to transport him to Moore’s to continue his radiation. Since we’d been at the hospital, I’d been contacting extended care facilities in the area for Bill to stay at during the rest of the radiation treatment. I found a place that felt good and was going to go see it after his treatment that morning.
At some point two doctors called me into the room where they had Bill, still on the gurney. They had been studying his MRI’s from the weekend. With Bill laying there, they told me that the tumor had spread to his entire brain and that I needed to look at hospice. They could do whole brain radiation, but it wouldn’t help. I felt as if I was on a different planet. Up until that point, I honestly thought that he would get through it. I knew it would be a long and hard road, but we were doing everything we could. Now they are telling me that I need to take him somewhere to die.
I probably called my mom and Bill’s best friend. All I remember is that I cried day and night and that it had started on June 7th and didn’t stop for years.
They sent us back to the hospital, I started looking not at hospice, but extended care, found one in Palm Desert that was the best I could find, and on Wed morning at 5AM they ambulance transport I hired to take him there showed up and I followed them to Palm Desert to get Bill checked in.
August 10, 2016
The whole extended care experience lasted from August 10th to August 18, but it feels like it was much, much longer. Bill’s friends came to see him, my family and the few friends that I had told came, and we just existed in state of unbelief. He still was aware of certain things. Like his friend Frank cracked some joke and Bill’s stomach bounced up and down from him laughing internally.
Lots of stupid things happened during that week, that I will go into detail with anyone who wants to know what to look out for, but right now, I just don’t want to relive it.
August 18, 2016
Unfortunately Bill wasn’t able to swallow and so eating and drinking had continued to be an issue and now I was afraid that he was going to be so dehydrated that it was dangerous. So the extended care arranged to have an ambulance take him to the hospital in order to put a feeding tube in him.
At the hospital, the doctor that was taking care of his case asked for me to come take a look at some MRI images. This was the first time that any of the doctors actually showed me anything. He told me that at this point a feeding tube would just be one more procedure that would be very hard on Bill and that he didn’t think it was what I should do. Since I’d already figured out that we never should have done radiation and the small amount of chemo since it’s all poison and didn’t help him and only made him weaker, I agreed not to do it. Then the social worker for Hospice showed up.
I found the nicest Hospice facility and on August 18th, took Bill there.
August 18th -25th, 2016
Friends and family continued to gather around, but mainly I was alone with Bill. He slept a lot, I had my laptop and worked from his bedroom. I played music that he liked, talked to him, rubbed his legs, feet and arms, kept his mouth moist, held his hands, and just tried to keep breathing. I’d go home at night to feed the cats and get some sleep, and then be back the next day.
One day, and now I can’t remember if it was the last or not, I was sitting in my usual spot on the right side of the bed and he put his left hand on my side and then on my heart. He knew it was me.
August 25, 2016
At 1 AM the hospice called me and told me that Bill had passed. I became a widow. I had no idea what to do and I asked them. They told me I needed to contact a mortuary so I asked if they could email me a list. Which they couldn’t do so I sat and wrote down numbers. At 2 AM after calling my mom, I was making calls to try and figure out who I wanted to come get him. And what I planned on doing, which was cremation. Bill and I never discussed anything along these lines, but I thought it’s what he would want.